When Grace was two and we were much newer at special needs parenting we grappled with this feeling of always being vulnerable simply because Grace was Grace. We could be having a great day but find ourselves quickly feeling miserable, or angry, or scared, or frustrated by big or little things. It could be the stare of another child. It could be a phone call from a doctor with lab test results that needed addressing. It could be someone at work complaining about their healthy kid throwing a fit at Target and wishing with all your might that Grace would throw a fit at Target. It could be dropping all the plans you’d made for something fun because Grace was hospitalized.

Looking back we were struggling against not being in control and feelings of helplessness. There were people in our life at that time (some of them are still around) who helped us in big and in small ways. Sometimes honestly all it took to feel better was for someone to say something kind. For someone to want to hold Grace. For someone to offer an idea we could run with, a different perspective on Grace’s abilities, or even just to convey they thought Kevin and I were doing right by Grace.

At some point in her second year, we came up with the idea of the scarf to try and explain our experience as special needs parents.

Here’s how we explained it to ourselves. Being a special needs parent is like being outside in winter on an especially cold and windy day. You aren’t there unprotected from the cold. You have boots, a warm coat, gloves, and a hat…you did what you needed to do to go outside. But somehow as you are out there walking, thinking you are all bundled up, cold air gets in under your coat and you are beyond freezing. A scarf would have prevented that cold air from sneaking in.

In our lives, we have to depend on other people to play the role of the scarf for us. To think that we can do it all just the two of us is too much.

So we played with the idea for a few years, it just kept coming back up. Then at some point we decided that sometimes it would be good to give an actual scarf to the people who are our metaphorical scarves. We made a card with an explanation. On the back of the card we make it all official using the tagline “a pink helmet production”. There’s a picture of Grace and Hoover that appears above the tagline. We take a picture of Grace wearing the scarf to put in the card. We tie the scarf with pink ribbon. And then we get it to the person. We don’t have strict criteria for receipt. And honestly, there are people who deserve one that we haven’t given one to.

I’m working on four scarf cards tonight. Four women who have been a scarf for us and should know how grateful we are for the role they have played in Grace and our lives. They all brought warmth in different ways. Our story isn’t the same without them. In a lot of ways a scarf is a small token of appreciation but hopefully, it is something that will impress upon them our gratitude.

It’s amazing to me that a metaphor we came up with when Grace was two hangs on today now that she’s 12. I also don’t believe we’ll ever outgrow it. What was true then remains true now. We are vulnerable simply because Grace is Grace and we will always need people to come alongside us in big and small ways so Grace can be Grace.

When I was growing up my parents got us a Christmas ornament every year. It was a tradition. I love unpacking those ornaments each year- seeing my mom’s handwriting listing my name and the year I received the ornament on the boxes. When Kevin and I were married those were the only Christmas ornaments we had for our tree.

It’s a tradition I wanted to continue with my kids. For Grace’s first Christmas we’d been through a lot and I remember struggling to find an ornament that represented that time- something we’d want to celebrate and remember every year about baby Grace as we unpacked that ornament. Ultimately I settled on an ornament of Dumbo taking a bath in a tub. The note I wrote on the box was one sentence in length that says “Because Grace loves taking a tubby!” One year it was a Cinderella ornament that marked her invitation to a princess birthday party. The first year she rode a horse-it was a horse. The year we flew to see her Aunt Heather and Uncle Drue married in Virginia it was a plane. This Christmas it was a Rapunzel ornament that we bought her at Disney World when we visited. Each year I write a note on the box about why we chose that ornament for the year.

My mom never wrote messages on the box about why she chose the ornament. She never had to because I know and I can tell the story. I started writing out the reasons on the ornaments we buy for our kids because I knew Grace wouldn’t be able to tell the story.

Special needs grief is a funny thing because this year as I was packing those ornaments carefully away I got to wondering if it mattered. If anything happened to us would those ornaments really follow Grace? When she grows up and if she were to live apart from us would anyone read the notes to her? Put up the ornaments? Was I just creating more for Graham to have to go through someday? Was it an unnecessary tradition? And in a larger sense if we are the sole keeper of Grace’s story and why she matters a few ornaments won’t begin to tell the story.

I feel different about Graham’s box. His ornaments are for him to have so that one day he can remember his growing up by going through a few ornaments that represent snapshots of what he liked and how he grew. I can picture him sharing them with his kids telling them about what Dad was like when he was little.

Ultimately Grace’s ornaments got packed in her box. I came to no conclusions other than it’s not a waste. If those ornaments are only ultimately for me then they are only ultimately for me. I chalked it up to grief sneaking up on me. Grief on a normal Sunday when we’d been to church, I was doing laundry, Grace was playing happily on the floor pulling every toy out of the basket in front of her, Graham and Kevin were out playing in the snow, and we were planning on Casey’s pizza for supper. It was grief that comes from the helplessness of not knowing. Grief because I’m not sure what to dream for Grace in the future. A grief that her experience will never be all that I dreamed for her. And the thing is I have a level of acceptance about all of this. I do. I swear. But even with acceptance, there are moments that catch you off guard and then all you can do is take the time to acknowledge the grief, share it if you need to, process it until it’s processed and then keep going. The ornaments are packed away but the work continues.